I will make this short: the past six months have been a living hell.
It all started in April when Pin's movements came back. I freaked out.
I was "on-duty" full time (Jeremy was in VA already) all while trying to pack our entire condo, wrap-up therapists & doctors and say goodbye to our closest friends and family.
A quick overnight hospital stay in Illinois and "more" medicine offered no more insight.
Then, we moved.
We bought our first home. It is 109 years old. She is a beauty...full of personality and charm but needs some serious botox. And probably a "lift and tuck" but, who doesn't?
More medication. More movements. More medication. More movements.
Then, an ER visit and three-day hospital stay in North Carolina. I freaked out again, literally YELLING AT DOCTORS THREATENING TO YANK MY DAUGHTER OUT OF THE HOSPITAL WITHOUT DISCHARGE PAPERS (clearly, I am the one who needs the meds). Then, an at-home EEG in NC. Finally, movements were caught on the EEG and we were told they "were not seizures." What?
Then, my amazing grandma died.
Then, an ER visit and two-day hospital stay in Virginia. Again, movements were captured but had no epileptic correlate. More freaking, more questions.
In three hospitals, in three states, I begged the Lord that He would show grace and mercy on us. I pleaded with Him that He would not have us walk down the "infantile spasm" road again and that they would ONLY be "seizures." He did one better:
(apparently our daughter has a bad case.)
A GI study last week confirmed this information and we are now pulling off seizure meds and upping antacids.
To say we are THANKFUL (and in need of a tan), is an understatement. We are beyond grateful for the Lord's kindness and love towards us. We still question, we still are disappointed, we still have pain BUT we still pray, we still have faith and we still believe there is a God who is good. So, we still wait.
I NEVER did go on those meds and I'm happy to report I'm still as crazy as ever.